What my immunologist said...

Discussion in 'Fibromyalgia Main Forum' started by DADI, Nov 7, 2008.

  1. DADI

    DADI New Member


    When i visited a new immunologist doctor,she told me:"no,you don't have any immune problems in your blood sample (reds and whites are ok),you don't have recurent pneumonia,You don't visit the ER,no fever,no infection,you don't have to take Antibiotics....so for me you don't have any immune problem".
    What can you answer to that???
  2. ladybugmandy

    ladybugmandy Member

    she probably did not do very extensive testing. CFS patients have many immune abnormalities.

    did she do immunophenotype or cytokine testing?

  3. DADI

    DADI New Member

    Based on her "first view" of my general blood sample,she found it was not usefull to dig deeper...

    But i couldn't say she was wrong,i don't catch infection,i don't go to the ER...so i couldn't answer anything usefull to let her check for more specialised blood exams.
  4. jabuaisha

    jabuaisha New Member

    is also a sign of a weakened immune system. It can go either way...either you are very sick ALL the time, or NEVER get sick with your average cold, flu, etc. I have two children both of them with neurological issues. One has autism, the other is ADHD/ODD, mood disorder NOS and severe hypoperfusion to the temporal lobes on a SPECT scan. Both of my kids have tested positive for high levels of heavy metal toxicity, viral overload, yeast overgrowth, etc. My 4 year old who has autism is sick constantly, ALL THE TIME, to the point where we are seriously considering putting him on low dose naltrexone to boost his immune system. My 16 year old however, has never been sick a day in his life. That is no exaggeration... all the way through daycare, preschool, elementary, and middle school he never came home with a sniffle, cough, sore throat, or any kind of bug, virus or bacterial infection. We figured he was just superman. After we found out about the medical causes of their neurological issues we pursued testing their immune systems because my four year old is sick all the time. My 16 year old tested worse on his IGG subclasses than my little one did.... Dr. explained that NEVER getting sick is not normal and indicates a problem also.

    If I were in your shoes and had an immunologist who didn't know her azz from a whole in the ground, I would go back to my pcp or to anyone who I thought would run the blood work for me and ask the to run IGG subclasses 1-4 to see where you come up. There some other preliminary testing that any doc can run to go with it and there was a post up a few days ago about the pp being dx'd with primary immune deficiency that lists the rest of them I think.
    [This Message was Edited on 11/08/2008]
  5. ladybugmandy

    ladybugmandy Member

    i agree. this doesn't sound like much of an immunologist. sounds like she did the same tests that a GP would do.

    if you have CFS / FM you do have immune system abnormalities.

    sounds like immunologists are about as helpful as neurologists when it comes to this disease.

  6. skeptik2

    skeptik2 Member

    One doesn't find what one doesn't look for!

    There are so many tests, they are too numerous to mention.

    Educate yourself.

  7. jasminetee

    jasminetee Member

    I'm just curious, why do you want to get immunological tests done? Most of us with CFS haven't done them. When you read about them being done those are specially designed tests I think and done for research purposes for the participants. But no real treatment is aimed specifically at correcting our immune problems as far as I know.

    That being said, you can bring her this:

    "Of 11 immunological tests done on chronic fatigue syndrome patients and on fatigued controls, 3 tests (protein A binding, Raji cell, or C3 or C4 [deviant values in either complement component were counted as positive]) with deviant results discriminated best among the groups. Other tests, including immunoglobulin G subclasses, complement component CH50, interleukin-2, and anticardiolipin antibodies, did not discriminate well among the groups."


    Copyright © 2001, American Society for Microbiology. All rights reserved.
    Detection of Immunologically Significant Factors for Chronic Fatigue Syndrome Using Neural-Network Classifiers
    S. J. Hanson,1,* W. Gause,2 and B. Natelson3

    Rutgers University1 and UMDNJ-New Jersey Medical School,3 Newark, New Jersey, and Uniformed Services of the Health Sciences, Bethesda, Maryland2

    Neural-network classifiers were used to detect immunological differences in groups of chronic fatigue syndrome (CFS) patients that heretofore had not shown significant differences from controls. In the past linear methods were unable to detect differences between CFS groups and non-CFS control groups in the nonveteran population. An examination of the cluster structure for 29 immunological factors revealed a complex, nonlinear decision surface. Multilayer neural networks showed an over 16% improvement in an n-fold resampling generalization test on unseen data. A sensitivity analysis of the network found differences between groups that are consistent with the hypothesis that CFS symptoms are a consequence of immune system dysregulation. Corresponding decreases in the CD19+ B-cell compartment and the CD34+ hematopoietic progenitor subpopulation were also detected by the neural network, consistent with the T-cell expansion. Of significant interest was the fact that, of all the cytokines evaluated, the only one to be in the final model was interleukin-4 (IL-4). Seeing an increase in IL-4 suggests a shift to a type 2 cytokine pattern. Such a shift has been hypothesized, but until now convincing evidence to support that hypothesis has been lacking."


    There's more out there too if this and what others have written isn't enough for her. You could also have her call Dr. Montoya. Oh and if you're positive for HHV6, have her call the HHV6 Foundation.

    Good luck and I'd like to hear what happens next.

    [This Message was Edited on 08/03/2009]
  8. choco-nibs

    choco-nibs New Member


    I agree with Teejkay. Unless you are suffering from acute symptoms or applying for disability(for furthur evaluation) there is really no need to go into indepth testing for the immune system. Really, unless you are looking into something specific for treatment then it's not necessary.

    My regular type tests such as CBC, RBC etc, all showed normal but my immunophenotyping etc, came back all abnormal. No treatment was suggested except Immunovir just to see if I felt better- nope- made me worse.


  9. jasminetee

    jasminetee Member

    Welcome to Prohealth :)

    Thanks for sharing about Immunovir. Sorry it didn't help you and I can sure relate to it making you feel worse. Almost every med makes me much worse.

  10. choco-nibs

    choco-nibs New Member

    Thanks for the welcome :)

    Yeah, we have to be careful when taking stuff because from my personal experience it seems everytime I have some sort of relapse I never go back to base. I think most Immunologists would agree sometimes it's just best to leave things alone unless we really know exactly what we are treating- especially with CFS.

    I read another one of your posts and you mentioned that your doctor said you were a "hard case". Was that you who wrote this? Well I have a doctor who keeps telling me I'm doing better- lol when I'm actually feeling worse.

  11. Andrew111

    Andrew111 Member

    I happen to be reading a little about this. From what I've read from various sources, she should, at least, test CD3, CD4, CD8, CD11, CD19, Natural Killer Cells, Rnase-L, Elastase, and Calpain.

    According to the Canadian consensus, she should test:

    37kDa 2-5A Rnase-L Immunoassay: protein, activity, PKR cleavage & elastase activity assays.

    Other immunological markers: NK [Natural Killer] cell levels and function per cell for low NK cell cytotoxicity; CD4-CD8 ratio; ANA; activated immune complexes - IgG sub-fractions including IgG1 and IgG3, circulating immune complexes IL2 and IL4; Th1-Th2 response to nitrogen stimulation (high levels of Th2 idicate autommunity), flow cytometry for activated/elevated lymphocytes; antilamin antibodies may autommunity and brain cell damage (lamin B antibodies are evidence of autoimmunity); humoral autoimmunity for polypeptides of the nuclear envelope (NE); antibodies in neuronel cells MAP2 (kinase regulators)

    BTW, seeing an immunologist who doesn't understand CFS is like seeing an internist who doesn't understand CFS. They don't know which tests to give, or how to interpret the tests they do give.
  12. Mikie

    Mikie Moderator

    Read Dr. Cheney's article on the immune problems for PWC. It explains why we rarely get sick from some contageous illnesses but can suffer chronic infections for decades. Many stealth pathogens thrive in our bodies below the immune system's radar and are not detected by the routine blood tests. Most docs, obviously including this one, do not understand the problems of PWC and immune issues. Good luck and welcome to our board.

    Love, Mikie
  13. isiselixir

    isiselixir New Member

    Maybe you could try to find an infectious disease specialist who understands CFS or at least believes in CFS and that would be more helpful. Just a thought.

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